Sunday, April 28, 2013

9 METASTATIC BREAST CANCER MAVENS

DAY 25's challenge: Share something from another health activist that everyone should know. (Only something? I've too many 'somethings' to share.)

Last week, Jody Schoger—beloved co-founder and member of the Breast Cancer Social Media group #BCSM — revealed she has metastatic breast cancer (MBC) after having no evidence of disease (NED) for 15 years. Yes you heard that right: 15 years later she became metastatic.

The blogosphere was abuzz with shock and love and support for Jody. Unfortunately Jody is far from alone; 155,000 Americans are living with MBC right now. Since Day 28's challenge is to create a must-follow list on a single social network, I'm focusing on bloggers withmetastatic breast cancer. I know there are many MBC bloggers out there; if you have an MBC blog and aren't listed below, please leave a comment in the section for a future post. :-)Here are 9 of my favorite MBC bloggers. To read more of their work, just click on their blog links and SHOW THEM SOME LOVE!!

First up is♥ JAN, whoblogs at Mournings Have Broken: "Each day I wake up determined to do something productive in the morning, because by mid-afternoon I am ready to veg out in front of the flickering screen of images and sounds designed to entertain. What can I get done? Perhaps scan some old photos into my computer and reminisce about the good ole days. Or reach out to prune or reach down to yank weeds in the front lawn so the neighbors don’t wonder why this woman who looks so healthy can’t keep up a perfect-looking landscape."

♥ T.K.blogs at Telling Knots: "I’m angry! I’m furious! I’m enraged! No one in my family has had cancer — until me.... It used to be that when I got angry I’d go for a long walk or spend an hour on my exercise bike. I can’t do that any more. I can’t pound pillows or throw stuffed animals against the wall. But I can write. I can and do write. Homo verbalis — I use my words. I am angry at cancer. I am angry at awareness campaigns that don’t donate to research. I am angry at people who call breast cancer 'the good cancer.' I am angry at my doctors for not having the tools to help me better. I am angry at my body for being so weak and tired. I am angry at the pain medicine that clouds my thought. I am angry at people who stay away from me because terminal disease scares them. I am angry, angry angry!"

♥ LISA blogs at Lisa Bonchek Adams: "We all have an expiration date. I’ve never thought of it like that before. We all have one. It is as if I’ve grabbed a carton of milk without looking. I took the one in front I guess, The one with the rapidly approaching date they put conveniently at the shelf’s edge for people to grab when they’re not paying attention. Except I did pay attention. I did. I was always paying attention. No one was more vigilant than I. I want to put this carton back, I want to say it’s not mine. I want to scream it. This must be for someone else. The date is too soon but I can’t trade it in for a new one. No givebacks. The problem is I don’t know exactly what the date says."

♥ ANNblogs at But Doctor... I Hate Pink: "Now, here I go, busting some bubbles like a kid on a summer morning, but facts must be faced: the thing Stage IV breast cancer patients know is that when you get regression or even NED, it's temporary. Cancer always wins.... But, me? I am living in today. My cancer has shrunk — today. Something worked — today. Something got me closer to my goal of seeing my son off to college — today. Screw the future. Today is good. Today is full of hope. Today is beautiful. I did what every girl does to celebrate — I bought some new shoes. I didn't get the kind I'd have bought four years ago, with sky high heels. I bought some Bobs, the flats that are by Sketcher, but I made sure that they had glitter in them. Some things never change. I decided if the cancer was shrinking, if I was approaching something resembling health, I should go out in real shoes, and not slippers.Shoes with sparkles."

♥ KATE blogs atThe Adventures of OBB: "I am a battle worn C-veteran now, fighting it for the third time and how can I not be scared to hell when my enemy keeps coming back? I am getting so tired of it and I just want it to leave me alone. I have so many other things I want to do and my little family deserves some fun. But again our summer will be spent doing battle against the uber-sized Bitch. And you know it isn´t just me suffering? Everyone in my life suffers too in their own way. I think of my beautiful daughter who will now understand much more about momma´s cancer journey. And I don´t want her to have to know about it. I don´t want her holidays ruined by my treatment or operations. I want to be free of this beast but I can´t seem to cut the chains." ♥ LORIblogs atRegrounding: [NOTE: This is from Lori's speech at the Supreme Court hearing on BRCA gene patenting] "I am here today to stand arm-in-arm with my BRCA sisters because we are all in this together. I am here today as a metastatic patient and because every day for the rest of my life, I will live with this disease. I need every viable avenue of research uncovered, because if I live long enough, each treatment will probably stop working for me. I am here today because we must stop trying to turn America PINK; and instead unite our focus on research, not ribbons. I am here today because 40% of the human genome is ALREADY patented, denying information about our bodies and preventing cures. I am here today because stumbling blocks on the path to a cure must, MUST be removed. I am here today because lives on are the line. I am here, perhaps most importantly, because I am the mother of a sweet, smart, wonderful 14-year old son who deserves to have his mother see him dressed for his first date, help him choose a corsage for prom, watch him graduate from college. He deserves to see my smiling through my tears on his wedding day. And breast cancer is slowly taking me away from him…."

♥ SCORCHY blogs at The Sarcastic Boob: "Pain erodes your world — steadily and forcefully. In losing the ability to function normally you lose confidence in your abilities and your self-esteem is blanched. You have no energy and lose the will to do anything; everything from putting on make-up to cleaning to cooking to talking becomes a burden. People lose patience with you, HR departments begin to hint that you’re replaceable, bosses begin to get impatient, friends don’t understand why you can have fun for a few hours one day and then lock yourself away for ten days more. You push through, even when you can’t, because you don’t want to be considered a loser or a malingerer. You feel like you’re losing and there is no way back. Society sees you walking with a cane and measuring your steps and tells you that this is your fault. You’re not fighting hard enough. You’re not happy enough. I mean, c’mon, if it was that bad wouldn’t you be in the hospital? Malingerer. Loser. Coward."

♥ KATHERINE blogs at I Hate Breast Cancerand MBCNbuzz:"I knew that NOT having children increased a woman’s risk [of getting breast cancer], due to the unopposed flow of estrogen. But until this year, I never knew that recent childbirth can temporarily increase one’s breast cancer risk. As noted on cancer.gov: Women who have recently given birth have a short-term increase in risk that declines after about 10 years. The reason for this temporary increase is not known, but some researchers believe that it may be due to the effect of high levels of hormones on microscopic cancers or to the rapid growth of breast cells during pregnancy. I don’t recall ever seeing any article or other information on this issue... But I don’t seem to be the only one who thinks more young women — mothers and non-mothers alike — are getting metastatic breast cancer."

♥ JODY blogs at Women with Cancer: "It has been difficult, and still is, to relate to this new information [having MBC]. Yet my life is different. How I prioritize will be different. One thing is steadfast: my commitment to #BCSM and advocacy. This is as strong if not stronger than ever. So is my knowledge that I am not alone in living with metastatic breast cancer. When there are times of complete stillness, I know all of you will be with me. That is how I feel about you. And that we are all in this together, in this moment and those to come."

12 comments:

What a good list - if I could underline and make bold in the comments, I totally would. These ladies are just so lovely. And the mix of storytelling and advocacy is so very powerful. Again - great list! ~Catherine

this list of wonderful women must have been both a pleasure to present, and also one you, and all of your readers wish did not have to be on - MBC maven bloggers. where would we be without their stories, their open, raw candor of what their lives, their hopes, their causes, their rants and their dreams are? we need them, we are enriched and enlightened by each one of them.

i hope each woman knows that there are legions of others who have been touched, inspired, comforted and a lot less lonely because of their efforts to tell the truth about the very beastly, and very stupid BIG C.

For all the MBC mavens who are blogging about their situations, there are thousands more who don't have a blog but are going through the same nightmare.

And then there are MBC Mavens such as yourself, non-bloggers but active commenters who help bridge the gap in this community. You are like the bee to the flower, sharing your words, moving on to the next blog, connecting us all with the beautiful thread of YOU!! ;-) Thank you, Karen!

Hi Renn. Just getting caught up in the blog world again after the chemo bubble consumed me again. So touched by your entry and so many inpsiring wonderful women who just got bitch slapped by the big c yet are continuing on and moving others through their experiences. I feel honoured to be included in this list. Sometimes when I re read my words again, I feel like they are someone else´s. Like I am having this out of body experience and I am not really living this nightmare. But it warms my heart to know I a helping someone else tackle their own mountain. Love from OBB xxx

I hope all is well. I wanted to let you know about this great resource Healthline has about breast cancer. The resource includes a virtual tour on understanding the progression of breast cancer, from where it starts to how it affects the body.

You can see the guide here: http://www.healthline.com/breast-cancer/anatomy-animations#1/breast-cancer-where-it-starts

I thought this would be a great resource for your site and wanted to see if you could include it on your page: http://thebigcandme.blogspot.com/2013/04/9-mbc-mavens-day-25.html

Please let me know if this would be possible. I’m happy to answer any questions as well.